Hello, my name is Craig I am 25.
Found out in August I had Squamous Cell Carcinoma on the back left of my tongue. It spread to lymph nodes in the left side of my neck. Had surgery in Toronto and 2 out of 24 nodes had cancer. The surgery went amazingly well(good positive attitude) they removed 30% of my tongue and used my forearm for the reconstruction. I have some quite impressive scars now. Mainly the one that goes from the middle of my bottom lip down to my Adams Apple then across the left side up to my ear. Also the graft sites on my forearm and leg.
I started Chemo and Radiation treatment in late November. 2 Chemo treatments of Cisplatin and 30 Raditation treatments. I have 3 treatments left as of today and Chemo is over thank God:)
Just found this site last night and have read a lot of good information...unfortunately there is a lot of us out there isn't there. I hope everyone is well. Oh I have a PEG tube for feeding as the radiation has burned my mouth pretty bad. Take Care and hope to learn lots here.
Craig

Hi Craig,

It sounds like you certainly earned your membership into the club that nobody wants to join. Welcome to the neighborhood. It is nice to hear your treatments are winding down. You are definitely at some of the worst times of this ordeal. Ask any questions and I am sure there are many who have traveled exactly the same path as you. Take care and I wish you the speediest recovery!

Ed

Hi, Craig.

Congrats on the end of chemo and the pending end of radiation. The joys of radiation may continue for a while as you go through the healing process. The inside of my mouth turned a bunch of different colors and textures over several months, then, one day, everything looked "normal." OK, no teeth on the right side of my jaw, but I'm not complaining.

Keep that positive attitude. Live well, laugh often. You've got a lot of good things to look forward to.

Ken

Welcome to the club nobody wants to join Craig!!
Sounds like you have the good positive attitude that will help you through your treatments. You found the best website for information on Oral Cancer! Ask any question you can think of and someone will reply. Best of luck as you near the end of treatment. It's a slow process, the old saying we often use is one month of recovery for each week of radiation.

Best Wishes, Danny Boy

Half way through radiation and after my first chemo I got thrush so bad I could not talk or open my mouth. It was very painful and put me in the hospital for a few days. Over the course of this I have been in hopital 3 times. I got out a week ago from my longest stay 3 and half weeks. It was very hard to be "in" during the Christmas season.
I am hopeful my taste buds will return and saliva will be back too. The doctors say it is such an individual thing so I hope:) This has definetly been a hard journey.
I have all my teeth and the pain is very tolerable right now. No where near the pain of the tumor...that was PAIN!
I get these urges to try foods, sometimes I am surprised at the little taste I am getting and sometimes it is VERY frustrating to have say Egg Nog taste like melted butter...yuch! That is the most aggrivating thing right now, not being able to eat. As appetizing as Resource 2.0 is, it is no burger:(
Thanks for the warm welcome and I hope to find others here with similar experiences:) Take Care!!!

Craig,

Taste, or the lack of taste, freaked me out. Over time, I got back a little at a time. First sweet, then bitter, sour, and salty. A little bit at a time. That made things taste weird for a while, but eventually it all made sense again.

I'm still working on tolerating acidic foors and hot, spicy foods. Others in this forum say they're eating Mexican, Thai, etc. again, so I'm looking forward to that. Let's hope you can, too.

As for saliva, everybody seems to have a different experience. I got back some saliva after 30 "dives" in a hyperbaric oxygen tank. The HBO treatments were prescribed to help with radiation damage to skin and bone. Saliva was essentially a welcome "side-effect" of the treatments.

Ken

Thanks for the warm welcome folks:) Just came back from number three treatment so only 2 left. Take Care!!!

Craig, welcome to the site. Sorry you needed to find us, but hopefully we will be able to help you and you can help us and new members as they join in the fun. Will add you to the prayer list and wish for your treatments to accomplish that which they are supposed to accomplish. The hardest time for me was the last week of rad and the first few weeks thereafter. Hang in there, it does get better.

Hello Craig

It troubles me to think of you going through all that at the age of 25. However you sound very strong and positive and I'm pleased you have only two treatments left.

Taste and dry mouth have been ongoing challenges for me. I favour sweet foods, even sweeter vegetables like peas, sweet potato etc are better. Spicy or acidic are no good at present. Have you looked at the American Cancer Society site? It has recipes for dry mouth etc plus tips for making food more appetizing and nutritious.

The wonderful people in this forum will offer you support. Let us know how you are getting on.

Love and light from Helen

Hi Craig,

Welcome to OCF. Sorry that You have had to face this beast, glad that You have joined us here. You have already been through quite alot and Your positive attitude is really great to see. Only two more treatments to go... Sending the positive thoughts out to You. Keep us posted on Your progress and keep on asking questions.

Peace
Jack
..........
Dx 1/15/97 SCC rt. tonsil met to rt lymph node Stg IV,
Srgry 1/23/97 tonsillectomy & mod radical neck dissection,
Radiation 35 trtmnts both sides